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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families of their Child’s Disability National Best Practice Guidelines Consultation and Research Report Author: Alison Harnett Contributing Authors: Brendan Dolan, Dr. Suzanne Guerin, Edel Tierney, Maria Walls. Published by: The National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability, Oranmore, Galway. ISBN 978-0-9557833-0-2 Copyright © 2007 National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability.

FOREWORD In response to a proposal by the National Federation of Voluntary Bodies to mark the European Year of People with Disabilities 2003, the Health Services National Partnership Forum agreed to provide funding for a project which would make a real difference to people with disabilities in Ireland and particularly to their families who support them. Having consulted with families and people working in the Disability Sector, it was agreed that the development of National Best Practice Guidelines for how families are told of their child’s disability would be a significant way to mark the year, while also leaving a substantial legacy by way of addressing an important issue which has remained unaddressed over many years. Having distressing news disclosed to us in a manner which lacks sensitivity or in an environment which is inappropriate causes additional stress at what is likely to be a difficult time. The central aim of this project is therefore the development of evidence based national best practice guidelines, education and training on appropriate procedures to inform families of their child’s disability when communicating a diagnosis or concern. The intention of the guidelines is to ensure: ● Improved outcomes for families being told of their child’s disability, through the implementation of best practice; and ● Improved support, guidance, education and training for professionals in the important and sensitive task of delivering this news. The development of our National Best Practice Guidelines is the product of rigorous research carried out over the past two and half years. I am delighted to present this report which sets out in comprehensive fashion the research carried out and the exhaustive consultation which formed an essential part of the project. We were convinced from the outset that a collaborative approach between families, carers, professionals and health service providers represented the best way forward and we constituted our Project Steering Group accordingly. We are delighted that this approach has borne fruit and that guidelines have been endorsed by all involved. What is important now is that these guidelines are implemented in full in all the relevant care and support settings. We are very optimistic that they will support best practice in this important area and will make a real and positive difference in the lives of families when they are told of their child’s disability. The completion of this project would not have been possible without the input and support of many people, too numerous to mention by name here, but nonetheless whose contributions are gratefully acknowledged by the National Federation of Voluntary Bodies. Foremost in our thoughts in this regard are the many families who shared with us their very personal stories. I would also like to acknowledge the valuable contributions of the many professional staff with whom we consulted. I wish to formally thank Dr. John Hillery and the other members of the Project Steering Group and also Dr. Suzanne Guerin from University College Dublin for her expert guidance of the research methodology. We are extremely grateful to the Health Services National Partnership Forum for its financial support and most importantly for making its expertise in the form of Tess O’Donovan and Marie O’Haire available to us on an ongoing basis throughout the Project. Finally, I would like to pay special tribute to Alison Harnett, our Project Co-ordinator, whose tireless work, commitment and professionalism, have made these very important guidelines a reality. Brian O’Donnell, Chief Executive, National Federation of Voluntary Bodies 3

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    ● Suggested formats for the produ

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    Age of parents at time of diagnosis

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    Frequency 40 30 20 10 0 Figure 5.13

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    Table 5.39 - Disability or syndrome

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    19 For this table the figures relat

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    ● Information and Support ● Cul

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    REFERENCES Informing Families Consu

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    APPENDIX I Informing Families Consu

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    APPENDIX IV INFORMING FAMILIES PARE

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    APPENDIX V List of tables and figur

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    APPENDIX V Figures Figure 2.1 - Nat

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